Two Years Post Op

For as long as I can remember, I've had headaches and "dizziness".  I do recall going to the doctor when I was about 9 or 10 and being told to write on a calendar each time I had a headache.  Other than that, I guess I just thought that the headaches and dizziness were normal.  When I was 43, the symptoms worsened.  The headaches and dizziness became worse, and I actually started stumbling.  I am a registered nurse, and I would have to arrange my supplies when I was doing any kind of treatment so that I did not have to turn my head back and forth too much or I would become very dizzy and lose my balance.  I also started experiencing neck pain, upper back pain and numbness, and right arm weakness.  I saw my PCP who referred me to a neurosurgeon.  I chose a group in Pittsburgh.  I had cervical spine x-rays, CT scans, and an MRI.  After two visits, the neurosurgeon pretty much told me that nothing was seriously wrong.  I left that office crying and feeling like I was a hypochondriac.  I returned to my PCP and told him about my recent visit to the neurosurgeon.  He said that what he saw on the MRI and what the neurosurgeon is Pittsburgh found seemed to differ, and he referred me to a local neurosurgeon.  This neurosurgeon called me into his office, showed me the Chiari on the MRI, and explained to me why I was having the symptoms.  I had decompression surgery Sept 22, 2008. In August of 2009, alot of symptoms were returning.  I called the neurosurgeon, who repeated the MRI and did a cervical spine x-ray. He felt that my symptoms were not related to the Chiari, but to cervical spine problems. That was a relief.  After unsuccessfully  trying PT to help reduce the pain, I had surgery on my cervical spine Nov. 30, 2009. Although I realize that I am still recovering from the spinal surgery,  I am somewhat frustrated at this point.  I am having pain at the back of my skull, neck, and upper back.  I have to sleep sitting up in a chair.  I also am doing some crazy things like increased forgetfulness, and difficulty finding the right words.  I was trying to tell my daughter the word hangnail and said "cactus" instead.  Although it's kind of funny, it's also scary. My balance problems seem to be back with a vengeance.  I am also experiencing some vision problems like dark squiggles in my vision and sometimes what I describe as "******* eye movements".  I am scheduled to return to work in three weeks.  I am an RN visiting nurse.  I am continuing with my physical therapy, faithfully doing my exercises at home, taking my vitamins, seriously working on managing my weight (I am clinically obese) as every doctor stresses the importance of weight management for effective pain management.  Has anyone experienced returning symptoms?  Has anyone had a similar experience and is able to offer any advice?

tcessna tcessna
41-45, F
1 Response Feb 11, 2010

I know exactly what you are going through.I have seen every kind of doctor you can think of and they have all come to dead ends after diagnosing me with this or that.Even setting me up with surgeons for carpel tunnel surgery only to find out alt the last minute that it was that I needed surgery for.Because I didn't have carpel tunnel it's my ACM causing all my debilitating symptoms.I had one neurologist which btw was the one who diagnosed me with ACM in the first place ask me if I had ever been diagnosed with any type of mental or emotional disorders.I felt as small as the wet scum on the back of an ant at that time I did the best I could to run out but was bed ridden because my body was so stressed from pain that it was trying to abort my unborn child.So feel your pain.I have been on disability now for 5yrs because I fell from a dizzy spell at work and broke my back and ended up in a coma for a while from pulling down a 20lb boat buffer on my head when I was trying to catch my fall.I just want my life back and I want help .I am hoping and praying that a pediatrician in Orlando at Arnold Palmer hospital can fix me.He has offered to look over my mri's and ct scans and call me for an appointment as soon as he figures out what he wants to do with me.So I am a little hopeful,but at the same time I feel like I will never get fix.